KENNESAW - It's been a year of neck braces, tryouts, and surgery for Kennesaw Mountain freshman Madison Hill.

An active 14-year-old and member of her school's color guard team, Miss Hill went through major surgery this summer for a rare and dangerous spinal condition called Os odontoideum.

It all started last spring when she began hearing popping noises as she lay in bed at night. Popping led to flashes of light and dizziness; in the end, her parents took her to the hospital for a MRI.

What doctors discovered was news no parent wanted to hear: Miss Hill was diagnosed with an unusual and life-threatening spinal condition. The condition usually goes undetected until the patient suffers an accident, which often causes irreversible damage to the spinal cord. Paralysis and even death aren't uncommon.

"It's a life-threatening condition because your spinal cord wasn't protected," Miss Hill's mother, Deborah Hill said. "If you were to get into a car accident or fall on a trampoline it's going to kill you or make you paralyzed."

In Os odontoideum, the first and second vertebrae at the top of the spine are unstable and loose. This means the spinal cord is unprotected as vertebrae slide around.

"On some occasions, if there is even minor trivial trauma - like a fall, getting out of the car and hitting your forehead on the car roof - it can traumatize or even sever the spinal cord," pediatric neurosurgeon said Dr. Andrew Reisner of Children's Healthcare of Atlanta at Scottish Rite.

Dr. Reisner treated Miss Hill and sees this condition anywhere from six to 12 times each year.

"If the spinal cord is severed at that level, there is irreversible paralysis from the neck down, involving the arms and the legs, and a complete inability to breathe on their own."

Dr. Reisner said risks come when the neck muscle is "flexed," which could be as simple as lowering the chin or extending the neck.

Many people don't have any signs of the condition until it is too late. Those who show signs experience symptoms like Miss Hill's: popping sounds, light flashes, dizziness, neck pain, numbness, or tingling in the arms.

It's important not to ignore warning signs, he said, especially when symptoms continue or get worse.

"You should listen to your kids when they tell you that something is going on," Mrs. Hill said. "It might be minor, but it really could be something major. Had we not listened to her we could have had a terrible outcome from this whole thing. Listen to your children if they have something, and if the doctors don't take you seriously, go to the next one until you get to the bottom of what's going on." Once diagnosed, the teenager who usually spends free time scrapbooking and hanging out with friends was scheduled for July surgery at Scottish Rite. She spent most of the sweltering summer months of June, July and August in a neck brace.

"Sometimes it was a little bit weird because you'd be out in public and people wouldn't understand it (the neck brace)," Miss Hill said. "It was really annoying, and it was hot."

Dr. Reisner described Miss Hill as "realistic, pragmatic, and down to earth." She faced her surgery with bravery, and she and her parents approached everything as a team, he said.

The lengthy and complicated surgery went smoothly and successfully, and Mrs. Hill was full of praise for Atlanta's health care system. Her daughter's spine is now held in place by metal rods and screws.

"People say, 'I wonder if her head's screwed on right?'" Mrs. Hill said. "Now we know it is - permanently."

Since the painful surgery and recuperation, Miss Hill has met even more changes in her life.

While still wearing her neck brace, she started high school for the first time in August. Even though she had to miss band camp and isn't allowed to toss flags into the air, she's still been able to live out her dream and dance as a member of the school's color guard. Miss Hill made the team in the spring.

While tossing and twirling isn't an option for the still-recovering teen, the school's band director wrote her a special solo so she could dance with the rest of the flag guard.

"I get to dance with an umbrella instead of using a flag," she said. "It's really encouraging to know that they're so caring, they really try to make sure everyone gets involved. It's not, 'Oh, you have a neck brace; you can't do it anymore.'"

Miss Hill said she'd learned a lot through her ordeal, and not just "really big medical terms."

"It's made me stronger as a person," she said. "I have a better understanding of people who have certain medical conditions. Things that are so petty and insignificant in the course of life don't seem important anymore."

efarnsworth@mdjonline.com

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